Miracle baby struggles for life

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LEE – He may be only a month old, but Nicholas Chandonait has fought harder to live than most people do in a lifetime.

Baby Nicholas has endured five surgeries for a complex congenital heart defect and a collapsed diaphragm since his birth on Jan. 3. His heart stopped during one procedure at Maine Medical Center in Portland, and he was dead for one minute, said his mother, Amy Chandonait, 26, of Lee.

“It isn’t very easy. We’re just kind of taking it day by day,” Chandonait said. Her husband, Ken, is a carpenter, and their daughter, Chelsie, is 4. “We haven’t really worried about money right now, and maybe we should be, but it’s on the back burner right now.

“We’re just trying to get through this.”

To see Nicholas in the pediatric intensive care unit might be unsettling. He is breathing on his own but is being fed through a feeding tube in his nose, his mother said. A big scar runs across his breastbone. He has had several blood transfusions, has a shunt in his heart and is on several medications.

And his medical problems continue. Nicholas is due for surgery Thursday, an operation to prevent acid reflux. Another, more major, heart surgery is scheduled in three months, his mom said.

Yet Amy Chandonait sees signs of strength in her son. Nicholas is 6 pounds, 3 ounces, a good weight. He has a tremendous shock of thick, straight dark hair, unusual in a boy his age.

“He is actually doing really well now, considering how many surgeries he has had,” Chandonait said. “For what he has been through, he looks wonderful. He has bounced right back. He has had a lot of prayers out there for him.”

Maine Medical Center answered many of those prayers. One of Nicholas’ doctors, pediatric cardiologist Dr. Adrian Moran of Pediatric Cardiology Associates of Portland, said Nicholas was born with tetralogy of Fallot, a complex series of anatomic abnormalities arising from the improper development of the heart’s right ventricle.

In Nicholas’ case, he had a hole between the ventricles of his heart and was missing a heart valve, Moran said.

Although the hole remains, in the five microsurgeries that followed, Dr. Reed Quinn – Maine’s sole specialist for congenital cardiac surgery – and Moran twice installed a shunt between Nicholas’ heart and lungs. They also repaired the collapsed diaphragm and did angioplasty on his pulmonary arteries, Moran said.

The surgeries were complicated by the tiny size of Nicholas’ heart.

“The heart is typically the size of their clenched fist, so with a baby, you can only imagine how small that is,” Moran said.

Nicholas would have died if not for a prenatal diagnosis about 20 weeks into the pregnancy, the surgeries, and pediatric heart-lung machines at MMC that kept him alive in the days after his birth and his surgeries, Moran said.

“The machines can rest children and allow the heart to recover after they have had a cardiac arrest,” Moran said. “The fact that the support was available at Maine Medical Center saved him.”

The prenatal diagnosis was deeply unsettling to the Chandonaits.

“I was very scared. I didn’t know what to think at that point,” Amy Chandonait said. “We just tried to get through it. There is no preparing for it, I’ll tell you. You just pray a lot and hope and try to be positive.”

“Without surgery, there is a 100 percent mortality rate. He would have died within the first week or so,” Moran added.

Nicholas’ prognosis is actually rather good, Moran said. The doctors’ immediate task is to get the baby eating normally. When that happens, Nicholas will need at least one more surgery, Moran said.

“He’s got complex heart disease, but if he can build his strength and recover, then I am hoping we can come back in four to six months’ time and close the hole in his heart and put in an artificial valve instead of the shunt,” Moran said. “If we can do that, then this kid could do very well.”

Some friends of Ken and Amy Chandonait are helping get the family back on its feet. The Chandonaits’ friends, including Jennifer Gordon of Prentiss and Doreen Rideout of East Winn, held a potluck supper Saturday at Mount Jefferson Junior High School and raised $2,934 to help the Chandonaits pay the tens of thousands in debt they have incurred since Nicholas’ struggles began.

“They do have medical insurance, but neither of them have worked,” Gordon said. “They have just tried to take care of their children and make it through this, so money is the last thing on their minds right now.”

More than 200 people attended.

“I think we had a really good turnout,” Gordon said. “I know that we had a lot of people that helped out. Everybody was willing to help out.”

Yet the struggles of the Chandonaits, who have lived at a Ronald McDonald House in Portland since Nicholas’ birth, are far from over, Gordon said. More fund-raisers are being discussed, but no plans have been made as yet.

Once all of the surgeries are done, Nicholas should be able to lead a relatively normal life, although he might never fully escape heart problems, his doctor says. The little boy on occasion might suffer from shortness of breath during strenuous exercise, and he will need surgery two or three times over the next 20 years to replace the artificial heart valve, which will not grow with the rest of him.

Yet his doctor said that if anyone can recover fully from his medical woes, Nicholas can.

“Having been through what he has been through, he is a tough little guy,” Moran said.

The Chandonaits are grateful for people’s help and for the doctors and staff who have cared for their son.

“The two of them [Quinn and Moran] have saved his life. They have been wonderful,” Amy Chandonait said. “Everybody has been so supportive and caring.”